The J-Pouch Guestbook 1

Please ADD the the Guestbook from our lead Guestbook page.

In response to Megan Hartman's August 11,1997 guestbook sign-in: As you can see when you read my message in the J-Pouch Guest Book, I was "through the mill" with UC for many years. Most years, even the oral Prednisone only worked for a few months and then it was back to the hospital again!! I think I paid for a room in 2 different hospitals in this area! I was VERY weak and tired from my first surgery in Nov. until the middle of March. But I would NEVER reconsider my decision. There is still some anal discomfort at times. I believe it is linked to what I eat. But it is not ANYTHING like the misery I endured before.It is not an exaggeration to say I know the location of every Rest Room in 5 local counties and most of the vacation areas I have visited(when I had the strength to take a vacation!). My children's lives were full; but many, many times I attended Field Hockey Games, Footbal Games and Band Competitions drugged to the eyeballs so I could deal with my pain. Be thankful Megan that you did not have UC for very long. And be assured you WILL fell better soon. Hang in there!
Pauline Doudrick <pdoudrick@highmark.com>
Harrisburg, PA USA - Monday, September 15, 1997 at 15:19:00 (EDT)

Hi everyone. I am in the early stages of researching the J-pouch (what's a W-pouch?) and beginning to think about having it done. I've had UC for almost 15 years, with periods of flares, followed by remission. Up until last year, episode was managed by mesalamine (in various forms) and some with the dreaded prednisone added. Last year, however, was different. The episode did not respond to prednisone and I was hospitalized on IV solumedrol and also Imuran orally. I developed pyoderma gangrenosum, which was much worse than the UC. Fortunately, I recovered completely, totally off both prednisone and Imuran for past six months and have had six months in remission, taking only azulfidine and now asacol and Rowasa enemas. I am in the early stages of another flare and, hopefully, will catch it before it progresses. My GI doc and I have begun to talk about the surgery. Although I hear "patient satisfaction" is high, I still have a lot of questions. Specifically, I am a runner and want to be able to get back to running regularly and training. My doc says I will be able to do so. Does anyone out there have experience with returning to normal running and racing? Also, has anyone been able to return to a normal diet? I am a vegetarian and so eat tons of fresh fruits and vegetables (also fresh fish). Will I be able to return to that? Finally (for now!), I am in San Francisco and would be interested if anyone has had the surgery here and what doc you used. Feel free to e-mail me at SFCathyJ@aol.com. Thanks so much and good health to all.
Cathy Johnson <SFCathyJ@aol.com>
San Francisco, CA USA - Sunday, September 14, 1997 at 19:36:00 (EDT)

I had UC for 19 years. Was on every drug known(or thought) to work. Took Prednisone for 16 of 19 years going off only for 3 years when I took 6 MP and Asacol. Eventually even they stopped working and it was back to Prednisone. Finally, after my Gastro. Specialist suggested the J-Pouch for the UMTEENTH time, I decided to do it. The BEST decision I ever made!!! I now have a life. 1st surgery 11/27/96, 2nd surgery 1/17/97. I am off Prednisone(but it took 5 months). I can walk my new Rottweiller(and have the strength to hold her!), go shopping, to church, anything I want. This IS better than UC ANY day, and no more fear of Cancer. THANKS FOR THIS SITE. I wish all UC sufferers could have access!
Pauline Doudrick
Harrisburg, PApa USA - Tuesday, September 09, 1997 at 11:44:56 (EDT)

I am so excited! I have found someplace to get info. about the j-pouch. I am in the process of trying to make a decision on which type of surgery to go with. I found an ostmy support group to talk with but very few of these folks knew about the j-pouch. I am a 36 year old female and I have had UC for 19 years with yearly flare ups sometimes twice a year starting about 10 years ago. I hope to get some much needed info. so I can make a wise choice. I read a letter from a MEGAN MARTIN from TX since you are in my neck of the woods and sound like you have been through the mill with this junk I would be very interested in getting an e-mail address or another way of making contact so we could talk. Any information I can get about the j-pouch surgery would be much appreciated. Thank you and I am glad to have found this site.
Ann Shorts <pooters@swbell.net>
Beaumont, TX USA - Monday, September 01, 1997 at 00:26:00 (EDT)

Just a note to let everyone know how I am progressing. I last posted a note 8/7/97. Things have been progressing very well. The BM's are down to 6-7 a day... What a great feeling. The anal burning is under control most days. I improved very rapidly after my surgeon perscribed Colstide to help reduce bile production. As I understand it Colstide is persribed generaly for high colesteral, but it has also reduced the burning. I take one table spoon of metamucil in the am and one after supper. Also taking 5 lomotil a day. I've gotten well enough to return to work 9/2/97. If things do not improve, (I expect they will) I already am better than I ever was with UC. It's great to have a new lease on life. Thanks again for this great site so pouchies can speak openly with fellow pouchies.
Jim Giarrano <jlgdataman@aol.com>
Streetsboro, Ohio USA - Sunday, August 31, 1997 at 23:43:54 (EDT)

Great site. Had U.C. for 6 yrs. and hospitalized twice with high dosages of Prednisone IV. and coming home to TPN for weeks. After being on 60 mg. Prednisone for 16 months and uncountable side effects(joint pain, mood swings, buffy face and body, uncontrolable eating, cateracts, ect,,,,) decided on the pouch surgery. First sugery was 4/97, second was 6/97. Hated the bag in between the surgerys.. Doing pretty good now with no complications as of yet. Still only about 60% of my strenth and not able to gain wieght yet. Surgeons Peter A. Tuxen, M.D. and Samuel K.M.Liu, M.D. of Stockton, Ca. were excellent. I think Doctors make a big difference.
Craig <craig@softcom.net>
Ca USA - Thursday, August 28, 1997 at 01:48:41 (EDT)

Thanks for providing a forum for information and an opportunity to share and benefit from others' experiences. In a couple of weeks I shall undergo the j-pouch hookup and ileostomy takedown. I appreciate the comments regarding skin care and diet. These have supplemented info received from my ET nurse and surgeon. Merci! Peg
Peg <maclloyd@gtn.net>
London, Ontario Canada - Tuesday, August 26, 1997 at 00:37:27 (EDT)

As a surgeon, I have found the information invaluable for the patient and even as a surgeon, I found it to be extremely helpful. It is indeed a great service to impart such information. Keep it up. Adarsh Chaudhary, M.S. Professor & Head, Department of Gastrointestinal Surgery G. B. Pant Hospital [University of Delhi], New Delhi - 2, INDIA
ADARSH CHAUDHARY <achaudhary@hotmail.com>
NEW DELHI, DELHI INDIA - Saturday, August 23, 1997 at 23:13:05 (EDT)

I had chronic UC for about 12 years before finally have a total colectomy under somewhat emergent conditions - dang thing was stricturing somewhere along the transverse section. Anyway, I had the pouch operation in the spring of '94, and the take-down in November of that year. I had an awful time in recovery from the last operation. The pouch would seem to work and I would get sent home, and then it would stop functioning and I would end up back in the hospital. This happened five times over a period of two months. In the end I was put on a rectal catheter. Fo a while in 1995 I was able to get along without using the catheter; gradually the anastimosis tightened, and I would go in for having the opening dialated - a terrifically painful procedure for me which had to be done under anesthesia. It became evident as time went on that the dilation route was not having the desired effect, and I was having to use the catheter more and more. Now, in 1997, I have to use the catheter virtually 100% of the time, sometimes even to release gas; about the only time that I don't have to use the catheter is when I have liquid diarhea and gas, but even then I must use the catheter top completely empty the pouch. My gut feels tender and painful much of the time, and I am susceptable to bouts of pouchitis. The catheter is a considerable source of iritation; on the other hand I am not plagued by sore peri-anal skin. Some days I am at my wit's end; other days, I'm fine with it. The thing is, I don't know of anybody else in this situation. I don't know what can be done about it (my surgeon suggests going back to an ileostomy, an idea I am not completely happy with), and I can't see me using this catheter when I am 85, should I live so long. Does anyone out there have any experience with this situation? I need help! Thanks for reading, and thanks to the owners of this site!
David Jensen <djensen@escape.ca>
Winnipeg, MB Canada - Sunday, August 17, 1997 at 15:01:25 (EDT)

Hi everyone.....Just got "hooked up" July 14. I am THRILLED to get rid of that bag! Just wondering if people could give me some feedback on how they felt the first couple of months. I can't really figure out how this is better than colitis, but maybe that's because I didn't have colitis for very long (2 months) before I had to have surgery. I'm encouraged by how many people say that they feel "wonderful" after having this surgery, but WHEN did you start feeling so wonderful?? BTW, I know my surgeon cruises this page, so hello to Dr. Colvin and thanks for doing such a bang-up job on my surgery. I highly recommend the good doc for anyone here in the D.C. area. Any info greatly appreciated!! Thanks.
Megan Hartman <2043340@mcimail.com>
Fairfax, VA USA - Monday, August 11, 1997 at 16:14:47 (EDT)

This is a GREAT site !!!!!!!!! Thanks for making it available to all of us Pouchies.... I suffered with UC for 20 years and finally after much pain and suffering decided to have the J-Pouch surgery. My first surgery was May 19, 1997, performed by Dr Frederick Slezak, Akron City Hospital. He did a great job! My Take-down surgery was performed July 21, 1997. Although I knew the first month would be difficult, I never realized the pain that such a small orifice could cause. The biggest problem I am having is the anal burning and irritation when I have bowel movements. I have tried ointments, cortisone, nupercanal, etc.... these have very little effect. I would appreciate any help to releive this very painful situation. It also seems to be worse in the evening. Also have trouble feeling that I have completely emptied my pouch. I'm encourage by the many success stories posted on this site and can't thank you all enought for taking the time to post your experiences. I guess it just takes time for things to start working properly
Jim Giarrano <jlgdataman@aol.com>
Streetsboro, Ohio USA - Thursday, August 07, 1997 at 22:24:27 (EDT)

Although unfortunate that we are all here on this site, its fantastic for me to find a place where everyone knows of is about learn what you've been through and what may lie ahead.
Rob Koch <DAHUI97@aol.com>
Basking Ridge, NJ USA - Thursday, August 07, 1997 at 13:09:23 (EDT)

I had been diagnosed with UC at the age of 15. It was under control for a while, but I had a real bad flare up at the end of my senior year (luckily I had great grades and didn't need summer school). Anyway, I had the operation in June of 1996 and I had the takedown in August of 1996. I am going for my 1 year check-up where they take a biopsy. I gave plenty of biopsys when I had a colon, but never from the pouch. Does it hurt more or anything? - Also, I have had conquered incontinence (for now), but I get these bad gas pains which are relieved by going to the bathroom. I had them more frequently than in the past, does anybody else get these?
Eric D <anthropology100@yahoo.com>
IL USA - Tuesday, August 05, 1997 at 14:35:26 (EDT)

this is so interesting, i had my ileostomy 2 years ago and i was so desperate to get the j pouch done. Now 2 years later and I still havent done it yet. Truth is im scared. But I am seeing my surgeon again in a month so this site is really helpful in my decision.
V.van der Werf <VVDW@Bigpond.com>
W.A Australia - Tuesday, August 05, 1997 at 11:55:34 (EDT)

Am so happy to have found this web site it is like coming home!!!!!!!! Have had my pouch since January of 1981 had it done in Portland Oregon, after having UC since I was 15 and had the surgery at 31. It was pretty new then but I felt it was worth the chance. And I have never regretted it. I was in a precancerous state anyway. Have had my share of pouchitis, dehydration...etc. But the last few monthes have been the worst. Leaking all the time and having to change my underwear all night long makes it hard to have much of a romantic evening. Sometimes I will be sitting somewhere (sometimes in front of a slot machine since this is NEVADA ha) and have an accident without any warning.. so went back up to Portland Oregon ...After the horrid test where they follow your bowl movement they came up with the dx that I had done TOO many of the exercises for your sphinter??? In fact they called my sphincter the Charles Atlas of Sphinters what a claim to fame (for you younger pouchies he was a famous body builder) and so my feelings of always having to go to the bathroom were caused from my sphinter not allowing them out, and then at night it would relax and that is why I was having accidents. They suggested biofeedback for the sphinter, but where I live is a little remote and no one here even knows about the inside pouch much less biofeedback. or doing irrigations every night, well gee if I have to go through all of that I was ready to get an outside bag... Any thoughts on any of this?? HELP!!!!! Would love to hear from anyone with pouches... Alice Anne Wagoner Winnemucca Nevada ALICE@desertlinc.com Fax 702-625-1002
Alice Anne Wagoner <ALICE@desertlinc.com>
Winnemucca, NV USA - Thursday, July 31, 1997 at 15:02:01 (EDT)

I'm glad to see a j-pouch site. I was diagnosed with colitis in 1989, but probably had it since youth. I was in denial about how bad it was, but at least that motivated me to do things I wouldn't have if I was sane, like getting my commercial pilot's license. In the fall of 1995, I had a severe flareup that nearly cost me my life. Despite losing 35 of my 160 lbs, being on TPN, going totally without food for seven weeks, being transfused with four units of blood, and missing three months of work, I was adamant that I did not want surgery. Finally, my body rejected the TPN (my liver and pancreas enzymes went bonkers) and the doctor tried to put me on a liquid diet. My body didn't like that, either. After that, I started bleeding again. They gave me seven more blood transfusions that day and sent me to Swedish Hospital in Seattle for a Thanksgiving Day colectomy. I felt better almost immediately, and let me tell you that first meal was the best one I'd ever had. An ET nurse locally who didn't have much experience with j-pouches tried to talk me out of the surgery (she had only seen ones 15 years ago), but I decided to risk it anyway. I am so glad I did. Now I can eat practically anything, including salads. I have only four or five BM's a day, and currently take two Immodiums and two tspns Metamucil daily. I have had my share of complications. I had steroid withdrawal that shut down my bowels for several days. I had post-surgical bleeding due to a faulty staple gun that required four more transfusions and another surgery. I had a bowel obstruction from adhesions that required yet another surgery. Then, I got avascular necrosis in both hips (from steroids) that required even another surgery and may require more (I've had six now). Yet, despite all my past problems, I am healthier now than I've been in years, and I can fly my seaplane without worrying about getting a sudden diarrhea attack. My surgeon, Dr. Steve Medwell, is a fine surgeon and a genuinely caring man who treats his patients with respect. My ordeal has made me a better, stronger, man. It has inspired me to help others. I started and run a CCFA support group for Crohn's and colitis patients. At 30 years old, I like my life has begun all over again.
Patrick Hall <flyboy@az.com>
Bellingham, WA USA - Friday, July 18, 1997 at 01:26:35 (EDT)

I have had a J-pouch for about 5 years now. Other than some overnight leakage occasionally, I am very pleased with the results. I would love to hear from others with a J-pouch. I am still on Immodium and wondering if anyone else out there is still taking it on a long term basis or may have a leakage problem as well.
Peter <peteranddan@earthlink.net>
San Diego, CA USA - Thursday, July 17, 1997 at 23:16:51 (EDT)

I have had a J-pouch for about 5 years now. Other than some overnight leakage occasionally, I am very pleased with the results. I would love to hear from others with a J-pouch. I am still on Immodium and wondering if anyone else out there is still taking it on a long term basis or may have a leakage problem as well.
Peter <peteranddan@earthlink.net>
San Diego, CA USA - Thursday, July 17, 1997 at 23:15:55 (EDT)

I had the J-Pouch done in Sept 96 and the takedown in Dec 96. The only complications I have had is pouchitis that I can't seem to shake. My doctor has me on Flagyl (which, by the way, absolutely cannot be taken with alcohol) to combat the pouchitis. It helps when I take it, but then the pouchitis always comes back. Otherwise, I feel healthy and happy and grateful to be a "normal" person again. I can eat anything I want, have good control, and when the pouchitis is under control, am very pleased with the results of the surgery. I would do it again without hesitation. I also had a difficult time tapering from prednisone, going into adrenal failure and severe dehydration before finding the slow enough taper schedule. I am moving on with my life now, thinking about getting scar revision on my abdomen (oh, the vanities of youth). Someday I want to have children, and would love to hear from anyone who has gone through it with a J-Pouch. I wish I had found this page this time last year - it would have been great to read about all these success stories. Good luck and good health to all!
Karen Neeb <BeenRose@aol.com>
Bloomington, MN USA - Friday, July 11, 1997 at 11:54:55 (EDT)

I am happy to see a site dedicated to "the pouch" it's nice to see there are lots of others out there.
Bev Sandford <sandford@connect.ca.ab>
Redwater, AB Canada - Wednesday, July 09, 1997 at 17:43:30 (EDT)

I WOULD LIKE TO HEAR FROM OTHER POUCHIES!!!
MEGAN MARTIN <ROBERTA372@AOL.COM>
SPLENDORA, TX USA - Tuesday, July 08, 1997 at 14:25:19 (EDT)

Hello everyone. I'm a "Spouse of Pouch" - my husband was suddenly diagnosed as having familial polyposis in 1995, with no family history (so now I can legitimately call him a spontaneous mutation!). We only found out about it by chance, after a bout of gastroenteritis would not clear up. He had his pouch done during 1995 because of the likelihood of developing cancer, and for him it was more of a psychological than a physical ordeal - having gone from being "well" to being "ill", for preventative reasons. Anyway, one thing I would like to say is that there is a pouch support group (not just J pouches) based in the UK called the Red Lion Group which is also international, though most of our current members are in the UK. We put out a quarterly newsletter which is both informative and fun (it's amazing how many "bum" jokes there are in the world!) and we compile research information from our questionnaires. A recent issue was devoted to family planning, for example. One due out soon is all about travel and leisure. Do please contact me if you would like to join. Annual subscription is currently £5 (or international money order for equivalent). Write to me for some back issues and a membership form, to see if it's for you. We'd love to hear from more people abroad. Morag Gaherty, Red Lion Group, 20 The Maltings, Green Lane, Ashwell, Herts SG7 5LW UK.
Morag Gaherty
Aswell, Herts, UK - Monday, July 07, 1997 at 17:37:37 (EDT)

Hello everyone. I'm a "Spouse of Pouch" - my husband was suddenly diagnosed as having familial polyposis in 1995, with no family history (so now I can legitimately call him a spontaneous mutation!). We only found out about it by chance, after a bout of gastroenteritis would not clear up. He had his pouch done during 1995 because of the likelihood of developing cancer, and for him it was more of a psychological than a physical ordeal - having gone from being "well" to being "ill", for preventative reasons. Anyway, one thing I would like to say is that there is a pouch support group (not just J pouches) based in the UK called the Red Lion Group which is also international, though most of our current members are in the UK. We put out a quarterly newsletter which is both informative and fun (it's amazing how many "bum" jokes there are in the world!) and we compile research information from our questionnaires. A recent issue was devoted to family planning, for example. One due out soon is all about travel and leisure. Do please contact me if you would like to join. Annual subscription is currently £5 (or international money order for equivalent). Write to me for some back issues and a membership form, to see if it's for you. We'd love to hear from more people abroad. Morag Gaherty, Red Lion Group, 20 The Maltings, Green Lane, Ashwell, Herts SG7 5LW UK.
Morag Gaherty
Aswell, Herts, UK - Monday, July 07, 1997 at 17:36:24 (EDT)

Ik ben een partner van een ex colitis patient. Zijn er partners die met mij willen mailen over het partner probleem? Ik kan vele vragen beantwoorden. Mail me je krijgt altijd bericht terug.
Sjon vd Berg <sjonvdb@pi.net>
Noordeinde, zh Netherlands - Thursday, July 03, 1997 at 19:03:54 (EDT)

I failed to leave my e-mail address in the last message. Hope to hear some wisdom on Pred withdrawal from some of you. thanks.
Drew Rogers <therogers@earthlink.net>
Manhattan Beach, CA USA - Saturday, June 21, 1997 at 15:27:35 (EDT)

• Back to My Home Page